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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

My Heart Is Broken....
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17 posts in this topic

We found out a few weeks ago that after years of trying and 10 rounds of fertility meds we conceived entirely on our own. I was diagnosed with celiacs back in November and have been gluten free every since.

Sadly our miracle baby didn't make it and I'm left with a sad heart. We saw a heart beat on Monday and this morning I miscarried. I'm scared to try again. I'm worried we will have to deal with miscarriage after miscarriage like so many others have and I don't know that my heart can handle that. I have had a dramatic change since going gluten free from less gray in my hair to my bones not hurting. I feel amazing. I run, lift weights, and eat very healthy and well balanced. So hard to understand why god makes the decisions he does sometimes.

My doctor said if my hormone levels continue to drop at the rate they are going she sees no reason why we can't try again after my next period. I've already passed the baby and all that is left is lining (thank goodness for that) it happened very naturally. A few word of encouragement would be great right now. I really don't feel like my celiacs effected anything (I'm super careful and dedicated to the diet). My doctor did say they will check my progesterone levels next time just to be sure they weren't the cause.

What a long, miserable day.

Jess

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We found out a few weeks ago that after years of trying and 10 rounds of fertility meds we conceived entirely on our own. I was diagnosed with celiacs back in November and have been gluten free every since.

Sadly our miracle baby didn't make it and I'm left with a sad heart. We saw a heart beat on Monday and this morning I miscarried. I'm scared to try again. I'm worried we will have to deal with miscarriage after miscarriage like so many others have and I don't know that my heart can handle that. I have had a dramatic change since going gluten free from less gray in my hair to my bones not hurting. I feel amazing. I run, lift weights, and eat very healthy and well balanced. So hard to understand why god makes the decisions he does sometimes.

My doctor said if my hormone levels continue to drop at the rate they are going she sees no reason why we can't try again after my next period. I've already passed the baby and all that is left is lining (thank goodness for that) it happened very naturally. A few word of encouragement would be great right now. I really don't feel like my celiacs effected anything (I'm super careful and dedicated to the diet). My doctor did say they will check my progesterone levels next time just to be sure they weren't the cause.

What a long, miserable day.

Jess

Oh, Jess. I am SO very sorry. My heart aches for you. Miscarriages are so devastating. I've been there and understand, though mine happened before my celiac diagnosis. It made me so furious when people would tell me there wasn't enough for a bond and that it was probably for the best, anyway. Well, that was crap. Don't listen to people who mean well but, well, are cruel. Surround yourself with only positive things including your husband. Concentrate on you during this time.

Freely grieve as long as you need to. It must be extra difficult as you have been so diligent on the diet.

Though cliche, take one hour, then one day at a time. You will undoubtedly go through a range of emotions - let them happen naturally. Please take care of yourself, ok? I will be praying for you, as many others will as well.

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I am so terribly sorry. I have no answers, but please know that you are in my prayers!

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I am so sorry (((hugs))) I know that it is very difficult, but you just start by taking it one day at a time and you will always have that bond to your unborn baby, but in time it will be not as difficult to think of the baby. I wish you ease of the pain this has caused and best of luck to you.

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Jess, I have been in your shoes as has my adult daughter. I told her, not to very long ago, that the reason may not be clear right now, but someday it will be. :)

Hugs to you and a good cry is required. xxxooo

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I am brokenhearted FOR you! This is the ultimate sadness....

Before I knew I had celiac, I miscarried three times...and I also had to take fertility medications. I know it is extremely difficult for you now, but I promise you--the grief DOES dissipate over time. It could be that your body still has not entirely healed from years of eating gluten, and you may be somewhat deficient in either vitamins or minerals that would have been necessary to help your baby grow. If you're currently underweight, please add healthy saturated fats to your diet (avocados, nuts, olives, organic butter, etc.). This will help your body absorb your fat-soluble vitamins...and having a bit more weight on your bones may help your hormones. Once my sister and I gained a bit of weight, we were both able to conceive and carry our babies to term. As you know, though, it was NOT your fault whatsoever that you lost your beloved baby. Some things cannot be explained...or understood.

In a few months, you'll see--your joy will return when you conceive again. In the meantime, my heart goes out to you....

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Your loss is so sad, and I'm sorry. It sounds like your pregnancy may have been possible though because of the changes in your body from a gluten-free diet. That's hopeful if or when you decide to try again.

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I'm so sorry for your loss.

Miscarriages are awful to endure, but it does not mean you cannot have a baby. You probably conceived because the gluten is out of your system. I bet you will conceive again if you can get up the heart to try. Just stick to the diet super-carefully and get very well-nourished to be sure things go well.

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I am so so sorry Jess. I know words won't do much good now but just know that when things happen that are out of your control there's always a reason. Nature is smart. I know everything will work out for you soon and you'll have the baby you've been trying for. As you know I'm sort of in the same boat.. I want to have a baby very soon but I feel like my body just isn't healing as fast as I'd like. These things take time unfortunately and can be so very frustrating. My heart goes out to you.

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I'm so sorry. This may help or you may just send the guys in the white coats for me. I really haven't said this to anyone but my hub.

I had 2 early miscarriages that I knew of. The kind where you say " oh! I'm pregnant. Let me stop the caffiene.". When I miscarried, it was just a strong period. But each time I felt it was a boy and the same person. When I finally was pregnant with my oldest, I felt he was those babies. I don't have a belief in reincarnation. I'm just sure he was trying to be born to me. So.... Maybe that body wasn't quite perfect, but in a few months, he or she will be able to grow in a new, better body.

The other good thing is, the doctor's are now on notice. Some don't get too concerned until its the next pregnancy. This gives them something to go on.

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kareng,

I can so relate! With my first miscarriage, I strongly imagined a little girl who resembled my mother. With my next pregnancy, I gave birth to a little girl who was the image of my mother. I, too, believed that she simply needed to be born. I've never spoken of this to anyone....and it amazes me that someone else felt this, too!

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So sorry for your loss. My thoughts are with you.

((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))

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If you saw me you would never think I was sick with anything I'm 5ft 4in and weigh 121 pounds with 22% body fat. I'm very fit and healthy. All of my vitamin levels are in the normal range and I feel great. I'm completely at a loss for words with the whole situations. Im very strict with the diet. We have a completely gluten free home and lifestyle, both of my children also have celiacs so we are extra careful with it.

I know in my heart that now wasn't the right time but I just want to throw a temper tantrum about it. I just don't understand why we had to try so hard to get pregnant for it to happen so easily when it did just to lose the baby in the end. I really don't see the whole point in that. I know god has a plan but is it to much to ask for him to send me a text to just clue me in a little.

Thanks for giving me a place to vent my hurt and frustrations.

Jess

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I'm so sorry for your loss.

Do things that nurture you. Listen to music, read a good book, watch a silly movie. Continue on your healing path, and when the time is right, your baby will come.

Don't put pressure on yourself to "start over" right away. Feel your feelings.

(((hugs)))

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If you saw me you would never think I was sick with anything I'm 5ft 4in and weigh 121 pounds with 22% body fat. I'm very fit and healthy. All of my vitamin levels are in the normal range and I feel great. I'm completely at a loss for words with the whole situations. Im very strict with the diet. We have a completely gluten free home and lifestyle, both of my children also have celiacs so we are extra careful with it.

I know in my heart that now wasn't the right time but I just want to throw a temper tantrum about it. I just don't understand why we had to try so hard to get pregnant for it to happen so easily when it did just to lose the baby in the end. I really don't see the whole point in that. I know god has a plan but is it to much to ask for him to send me a text to just clue me in a little.

Thanks for giving me a place to vent my hurt and frustrations.

Jess

I have had five miscarriages due to endometriosis and the pain was all consuming.

Loves2travel has it right in my opinion....well meaning people say the dumbest things. Just ignore them and heal.

I finally conceived my son and I will tell you that I can't imagine having a different child. I know that is just talk to make myself feel better but I really can't picture it.

I am very sorry you are going through this. Big Hugs. Be good to yourself.

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I am so sorry. :( A big ((((HUG)))) to you, and know that you will be in the thoughts and prayers of so many of us.

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I can't really offer you anything but big cyber hugs, but I do know that there is a board on the forums at babycenter.com just for grieving mothers after miscariages. I've not been there, but I've heard it's a great community of support. I know there were several here who've also 'been there done that' who've offered you support, but if you feel like you want to talk to others going through this at the same time, I would encourage you to check it out. Big hugs!

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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